Blog

Dr. Juna de Vries (Erasmus University – The Netherlands) has been awarded the AEA Community Seed Grant to investigate the Patient Reported Outcomes while Manipulating the Immune System in autoimmune Encephalitis. Learn more about her study and how this will affect those affected with autoimmune encephalitis. You have been awarded the AEA Community Seed Grant, can you tell […]

There are 7,000 rare diseases that affect millions of people. In the USAA disease is considered rare if fewer than 200,000 people are affected by it. Because these diseases are rare, a lot is still unknown. This creates problems in the management of rare diseases, like autoimmune encephalitis, because it leads to misdiagnosis, unmet treatment, […]

Dr. Soon-Tae Lee (Seoul National University Hospital – South-Korea) has been awarded the AEA Community Seed Grant to investigate the Development of optimal clinical approaches in seronegative autoimmune encephalitis. Learn more about his study and how this will affect those affected with seronegative autoimmune encephalitis (AE). You have been awarded the AEA Community Seed Grant, can […]

Over the past 20 years, significant advances have improved our understanding of diagnosis, treatment, and underlying causes of AE. The number of new publications has increased dramatically in the past few years. And here, we will share some recent advances made in the area of novel therapeutics and biomarker discovery. Sell at al., Autoimmune encephalitis: […]

Last year we launched the Research Network at the start of the COVID-19 pandemic. A year later, we are still in the midst of the pandemic but seeing the light at the end of the tunnel. With your support in 2020, we can financially support three research studies focused on the diagnosis, management, and outcomes […]

The Research Network funds research that has a direct impact on those affected by AE. We have two generous donors that will match any donation you make to the Research Network, up to $15,000.  With your support last year, we are investing in three impactful AE studies! We will announce these grant recipients on Tuesday May […]

A great example of AE Alliance facilitating research is the recently published ‘Best Practice Recommendations for diagnosis, acute-, symptomatic-, and long-term management of Autoimmune Encephalitis’. The recommendations result from the hard work and collaboration between 68 AEA Clinicians Network members from 17 countries, initiated and led by Dr. Hesham Abboud (University Hospitals, OH). These recommendations […]

At the WED Conference we heard Dr. Tom Pollak talk about how after encephalitis you need to establish a new relationship with your body and brain. He cited research that after encephalitis, people are twice as likely to develop an anxiety disorder, nearly three times as likely to become depressed, and 114 times as likely […]

We are excited to report the first international best practice recommendations for  the management of autoimmune encephalitis. The papers result from the hard work and collaboration between 68 AEA Clinicians Network members from 17 countries, initiated and led by Dr. Hesham Abboud. These recommendations will be of great value to AE patients and clinicians all […]

This Rare Disease Day, and in honor of Brain Awareness Month, HESA and AE Alliance have come together, to kick off our #AskMeAboutAE campaign, visualizing the consequences of autoimmune encephalitis. No one understands the daily struggles like you and your caregivers. You experience the consequences of AE every day. It is important to talk about […]